About the NMO
NMO name | Haemophilia Foundation of Zambia (HFZ) |
Location | Lusaka, Zambia |
Founding date | 2012 |
PWBDs served | 355 |
Background
The Haemophilia Foundation of Zambia became a WFH NMO two years after its founding in 2012. Currently, the two major WFH programs active in the country are the WFH Path to Access to Care and Treatment (PACT) Program and the WFH Humanitarian Aid Program. In addition to this, a WFH Research Support Program grant is helping healthcare professionals strengthen their data management practices, and the WFH World Bleeding Disorders Registry (WBDR) is using local data to contribute to global hemophilia research.
Q&A with the NMO
The following answers from the NMO have been edited for clarity.
What are the vision and mission of your NMO?
The Haemophilia Foundation of Zambia envisions an improved quality of life for people with hemophilia and other inherited bleeding disorders. Our mission is to contribute to the provision of quality healthcare for people with these conditions and their families.
What services do you offer to your community?
We provide training and outreach programs for healthcare workers, community health assistants, patients, and caregivers. We also conduct self-care camps, offer psychosocial and bereavement support, and run awareness campaigns through radio and television programs.
What are the challenges your NMO faces?
Our daily struggles include bereavement support for PWBDs, managing non-adherent people who miss prophylactic treatments and present for acute bleeds, and dealing with limited diagnostic capacity—including an insufficient number of hematologists in the country. There is also a lack of regular consultations between healthcare workers, patients, and families. The HFZ has responded to these challenges by developing bereavement programs, partnering with organizations like the WFH, and engaging with the governmental Task Force on Haemophilia and Sickle Cell Disease (SCD) to improve treatment guidelines.
Why did your NMO join the WFH, and how has your experience been?
The HFZ joined the WFH to improve the lives of people with bleeding disorders in Zambia. By collaborating with the WFH, our NMO has gained access to training and technical guidance, donated treatment products, and global programs that support diagnosis and treatment. A major breakthrough for us was when we started receiving donated non-factor replacement therapy—those donations have drastically reduced bleeding episodes for PWBDs here in Zambia [to watch a video on non-factor replacement therapy in Zambia, click here]. To summarize, our partnership with the WFH has been transformative.
Have you been successful advocating with the government?
Yes, and we believe that our advocacy efforts led to the inclusion of factor concentrates in Zambia’s Essential Medicines List in 2020. Our close collaboration with the Ministry of Health and the Zambia Medicines Regulatory Authority (ZAMRA) has streamlined the import of donated medicines and expanded national treatment capacity. ZAMRA also invites us to stakeholder workshops to review draft guidelines pertaining to the importation of treatment product donations.
Which WFH program has been the most impactful for your community?
The WFH PACT Program has been transformative for Zambia’s bleeding disorders community. Through this initiative, we hosted the first National Bleeding Disorders Symposium, which brought together stakeholders from the entire country. Following the signing of a Memorandum of Understanding (MoU) with the Ministry of Health to improve conditions with our community as part of the WFH PACT Program, the government began purchasing large quantities of factor VIII and factor IX for the first time. The experience taught us that a key element of collaboration is involving people with diverse expertise and not relying too much on any one person.
Would you like to highlight any of your team members?
We would like to proudly highlight the outstanding contributions of Jonathan Sinkala, a volunteer whose dedication has made a lasting impact on our work. Jonathan has been instrumental in improving data collection and reporting on bleeding disorders in Zambia, ensuring accurate tracking of treatment use and helping identify gaps in care. His consistent communication with patients and families has strengthened trust between stakeholders and has kept the organization closely connected to community needs. Volunteers like Jonathan are the backbone of the HFZ, and his commitment continues to inspire us and community-members across the country.
Would you like to share a story of a PWBD who has benefited from your collaboration with the WFH?
Edward is a young patient with hemophilia A who faced life-threatening bleeding complications after an amputation. In urgent need of anti-inhibitor coagulant complex medication, he was saved thanks to the swift response of the WFH Humanitarian Aid Program team, which provided the life-saving treatment. The donation not only saved his life but also highlighted the powerful impact of our partnership with the WFH.
How do you envision the future of the bleeding disorder community in your country?
We envision a brighter future where PWBDs have less mobility issues, where their hospital stays are reduced, and where they can enjoy a better quality of life.
Find out more about the WFH in Zambia
Interested in learning more about how the WFH is helping to change lives in Zambia? Read more articles and watch some videos released over the last year on the WFH news page by clicking on one of the links below:
- To read “Making a difference in Zambia, one patient at a time” click here
- To read “Chatowa Kawonga: from diagnosis to determination in Zambia” click here
- To read “From crisis to control: the effect of WFH support in Zambia” click here
- To read “New ultrasound synovectomy program brings hope to hemophilia patients in Zambia” click here
Find out more about other NMOs
To read about the way the WFH and NMOs collaborate to make a difference in local bleeding disorders communities, please read “National member organizations: the heartbeat of the WFH” here.
To read more stories in this series, please click on one of the links below.
NMO | Country | Article |
Federação Brasileira de Hemofilia | Brazil | |
Asociación Costarricense de Hemofilia | Costa Rica | |
Fundación Apoyo al Hemofílico | Dominican Republic | |
National Hemophilia Network of Japan | Japan | |
Kenya Haemophilia Association (KHA) | Kenya | |
Kyrgyz Hemophilia Society Community of Handicapped-Hemophiliacs of the Republic of Kyrgyzstan | Kyrgyzstan | |
Libyan Association for Hemophilia | Libya | |
Hemophilia Society of Malaysia | Malaysia | |
Haemophilia Association of Mauritius | Mauritius | |
Federación de Hemofilia de la República Mexicana | Mexico | |
Syrian Hemophilia Society | Syria | |
Haemophilia Society of Tanzania (HST) | Tanzania | |
Association Tunisienne de L’Hemophilie (ATH) | Tunisia |
